Understanding Immunotherapy

August 2, 2017
older white couple smiling softly and embracing outside

Are you on an immunotherapy?

It seems like a simple question, but there is actually a lot of confusion about what immunotherapy is and how it works. It is not surprising that patients and caregivers are confused. Cancer is a complex illness and is treated with many different types of drugs. While many people have heard or seen advertisements for new cancer drugs that target the immune system, far fewer know how these drugs are given or what side effects they may experience.

Last year, the Cancer Support Community held an Immunotherapy Summit; however, half of the people who applied to be a part of the summit were not eligible because they or their loved one had not been on an immunotherapy drug – they were on a targeted drug or chemotherapy. A case more common than not.

Possible reasons for this confusion became clear at the Summit. We learned from patients and caregivers that:

  • Most knew very little and some knew nothing about immunotherapy before starting treatment.
  •  Some did not know until after they started treatment that immunotherapy differed from, and was not a type of, chemotherapy.
  • Many did not know that they would receive the immunotherapy as an infusion. They were expecting an oral medication.

It is important to know what type of medication you are taking. If you are unsure, ask your doctor or your Oncology nurse. A great resource to begin with is our Frankly Speaking About Cancer (FSAC) series which provides easy-to-understand information about different types of cancer treatments. One of the most recent additions to this series, FSAC: Your Immune System and Cancer, includes online educational materials, print/downloadable booklets, and webinars. Coming soon are Spanish-language materials and video testimonials from patients and caregivers about their experiences with immunotherapy treatments.

Talking About Side Effects

If you are on an immunotherapy—whether it is an approved drug for your cancer or one being studied in a clinical trial—it’s important to report any side effects, or anything that you think might be a side effect, to your medical team.

With immunotherapies, side effects typically occur when the immune system gets too revved up from the treatment. This can cause an immune system “overreaction” that results in:

  • flu-like symptoms (some patients say it’s worse than any flu they have ever had)
  • rashes
  • fatigue
  • thyroid problems  
  • gastrointestinal problems (colitis)

Side effects that are mild or common are typically treated with hydration, nutrition, or over-the-counter medications. You may need to be hospitalized if the fatigue becomes severe or the flu-like symptoms become debilitating. If the problem is severe enough, you may need to be given medications that can shut off the immune system in order to stop the immune reaction.

Many cancer patients on immunotherapy drugs are afraid that telling their doctor about their side effects will result in stopping treatment or being dropped from a clinical trial. But having side effects doesn’t mean you can’t stay on the treatment. You may just need to take break for the symptoms to resolve.

Sharing Our Findings

The “community” in Cancer Support Community was on display at the Immunotherapy Summit. Participants learned a lot from one another and we learned a lot from them. To share what we learned, we wrote an article “Helping Cancer Patients and Caregivers Navigate Immunotherapy Treatment “for the February 2017 issue of Evidence-Based Oncology. You can read our article.

The Cancer Support Community is a primarily national non-profit organization with international affiliates that provides emotional, social, and educational resources for anyone touched by Cancer. To learn more about Cancer support, information, and financial resources, check out http://www.cancersupportcommunity.org/learn-about-cancer/resources.